I’m … Done?

Wow, some amazing news! Seven years after symptoms began, six years after getting a diagnosis, and nearly six years of being on a shit ton of drugs, I am (surprisingly) done with chemo!

Well… at least I hope I am. This disease has at least a 40% chance of recurrence, and “22% [of those afflicted] progress to end stage renal disease” (dialysis), so time will tell.

If I have to go back on chemo down the road, so be it.

But for now, I’m so ready for a break. It will be nice not having this poison-with-good-intentions running through my body, nice to no longer be on those damn steroids. Hopefully the heartburn will subside. And the neuropathy will no longer be a concern. All good things.

I’ll be 58 soon, so I have seven more years to work. I am hopeful my kidneys can hold out for at least that long, even if it means more chemo. Yes, the dialysis nurse told me I can pack up all my dialysis supplies in a cute little travel suitcase, but do I REALLY want to be dialyzing myself at the Comfort Inn in Ruidoso?? No. The answer is no.

I’m in an online kidney disease support group, and someone posted a picture of all the supplies they send for home dialysis. Oh my lord. You literally need a separate room to store all that stuff.

But, who knows, maybe I’ll be one of the lucky ones who kicks this. We’ll see.

I had a video visit with my oncologist last week. The plan going forward is blood work in July then every few months after that to monitor my creatinine levels. If it rises above 1.5, that will be a sign things aren’t going well. I will do a 24-hour urine collection this weekend with repeats every three to four months.  If that stays at “no measurable protein found,” that will be a good indicator of stable kidney function. If even trace amounts of protein are found in the urine, I will have to do more frequent urine collections (wheeee!). Another kidney biopsy may be needed, but only as a last resort due to the potential for kidney damage.

He said that if lab or urine collection results do indicate the disease has returned, I will start back on chemo once a week until it’s controlled, then taper down like before. But… that will be in indicator I will need to be on chemo for the rest of my life.

In his opinion, if there is no spillage of protein in the urine in six months, it’s unlikely to come back.

I will see him in August but then he is retiring at the end of the year. He suggested I follow up with New Mexico Cancer Center and said he will put in a referral for me to be seen there. Good for him that he is retiring; he’s certainly earned it. But he said he gets all the difficult cases so it will definitely be a loss for his patients. He is a very good doctor.

We also discussed better follow up with nephrology. He said that right now he’s been doing all the monitoring of my status, but with his retiring, nephrology will need to take over. I told him of the difficulty I’ve had trying to get an appointment with my current nephrologist, who is a solo practitioner. I like him well enough, but between my schedule and his, I haven’t seen him in over 18 months. I told him about the large nephrology group on Jefferson I happened across while getting a bone density scan across the street. He said he thought it was a good idea for me to follow up with them. “Fresh eyes,” he said. Additionally, my current nephrologist is likely nearing retirement age as well. At least at this larger group, if my provider leaves, they can just hand me off to someone else in the practice.

So the plan is:

• One more chemo injection in mid-April.
• 24 hour urine test now with repeats every three-ish months.
• Repeat blood work in July then every three-ish months.
• Establish care with new nephrology group. He said I should get a referral from my PCP.
• Establish care with new oncology at the NM Cancer Center with plans to see them in the fall.
• See him again in August.

BUT… about an hour after I got off the call with him, he called me back to say, “Why don’t we just stop with the chemo now? I think we’re at a good place.” Sounds good to me! I was hoping to see the nurses one more time and bring them some gift cards or goodies or something, but I’ll try to figure out a way to do something for them soonish.

WOW! I’m done!!

I tried to message my PCP for the referral to nephrology, but he wasn’t listed as one of my providers any longer in myChart. I called Lovelace, and yep, he retired. I was told that the last PCP I saw there (I’ve only seen her once) could put in the referral since I saw her within the last year. I sent a message to her. Her nurse replied back stating, no, it’s been too long, I would need to schedule an appointment to get a referral. I told her the person I spoke with on the phone said the opposite. Nope, she said, I need to make an appointment. I called back, relayed the information, and was told again that I didn’t need to be seen since I had been seen within a year. Seems reasonable. Then I was placed on a long hold. He came back on, changed his tune and said I did need to be seen since the last time I was seen, it was for a follow up. That made no sense to me, but whatever. It’s only (a waste of) time and money, right? I scheduled an appointment for early May.

The next day I got a call from the NM Cancer Center. That was quick. I’m scheduled to see them in September.

Of course, there is a hitch to some of these plans: Apparently BCBS NM and Lovelace have not reached an agreement regarding their contract. Per the email and the letters I’ve received, if a new contract is not in place by June 1, all Lovelace doctors and facilities will no longer be in-network options for BCBS. Nice. IF this falls through, it will be disastrous for health care here. We’re already so short of providers (dear god, don’t get me started), and this will only make it worse. My oncologist said he thinks they will work it out because it will be a financial nightmare for both Lovelace and BCBS if they don’t. I hope he’s right.

(Per Google, the CEO of Lovelace makes about $850,000 a year—probably more with bonuses—and the CEO of HCSC [which operates BCBS NM, among others] makes over $40 million a year, “one of the highest-paid health insurance CEOs.” Seems like Maurice Smith can give a little. But I guess he needs another yacht.)

I’ve seen my endocrinologist a few times over the past several months. No particular concerns on that front. My diabetes is well-controlled. She increased my thyroid meds slightly, and she also ordered an echocardiogram that I had done in December. As far as I understand, that was normal.

I talked to her about my continued fatigue. My work schedule has been lighter this year so far, which has been great. I had a bunch of comp time I needed to use up, and I’ve also been able to take some time off due to some clinic contracts that haven’t been finalized yet. I’ve taken the opportunity to try to get caught up on sleep. But it seems that no matter how much sleep I get, I’m still just exhausted all the time. She feels this is related to the Velcade (chemo) that I’ve been on for so long. I’m really hopeful I’ll have more energy now that I’m off it.

I’m still following up with dermatology every three to four months for my hair loss. I see him again in in a few weeks. My hair still seems to be falling out based on what comes out on my brush and in the shower. The dermatologist says he is seeing regrowth (under a magnifying glass) but that it takes a lot of time for it to make a visible difference. So far, no itching or pain in my scalp, so that’s a win. Oh the irony of never having spent any money on my unruly hair and now having to spend $150 a month to keep it on my head. Geez.

Other stuff coming up, pending a happy marriage between BCBS and Lovelace: mammogram and breast ultrasound in June, then a follow up with the provider from the breast care center since I’m at higher risk of breast cancer.

I was off last week, and we took our dogs up to the Four Corners area so they could swim in some lakes while Kyle fished. It was a fun trip. Great weather for the most part, and the lakes were mostly empty at this time of year. In May, Rose and I plan to go back up to Humboldt to hang out with Susie. She’s been dealing with her own pretty serious health issues of late. We were up there in November last year, and it was a really great trip. (We literally saw zebras in the wild. ZEBRAS.) Susie’s had surgery since then, so we decided to head back up. We haven’t even told her yet! Surprise!